It has been awhile since we sent an update. We were trying to send whenever we got good news… but lately, we haven’t gotten any… Nora’s numbers have been sliding.
Her red, white and platelet blood cells are critically low. She needed a platelet transfusion last Thursday. That same day I kissed her and I poked her in the eye with my nose. The whites of her eye turned red and she had a bruise in the socket. Whenever something happens to her head, we have to go to the emergency room. So we spent Thursday night until 3AM in the pediatric emergency at Stony Brook. Luckily, she got platelets that day, otherwise it could’ve been much worse.
Nora’s neutrophils are also critically low. She is borderline neutropenic again. If they drop any lower she will not be able to go out in public. Her creatine, glucose and BUN (nitrate) levels have been very high so we are watching her kidneys and forcing water into her. She is always tired. She has so few red blood cells that it is like she has altitude sickness at sea-level. We were scheduled to go on her Make-A-Wish trip to DIsney in February, but we may have to cancel because she doesn’t have enough red blood cells to fly — the change in pressure could make her hemorrhage.
These past weeks have been a huge emotional blow. This morning Nora was crying because she doesn’t want to take her medicine anymore, she wants to play with her friends and she hates having to be careful. We are up to 4.5ml of cyclosporine a day. The side effects are making her gums incredibly swollen and she is growing hair everywhere. Her body is once again covered in bruises. I am so thankful she is not a self-conscious teenager right now!
We still have not found a bone marrow donor match. Shawn’s family is having a bone marrow and blood drive in Maine in December. We are hoping that since she has a whole lot of Getchell genes, and his family-line has been in the ‘State of Maine’ since it was part of the ‘Plymouth Company’, maybe we’ll find a match up there.
We continue to ask that you all pray for her healing with all your heart. With all your collective positive energy, we believe she will get better.
If you are able, please give to ‘Friends of Nora Getchell’ PO Box 212 Mastic Beach, NY 11951 so we can get more people swabbed. Pass this email onto friends so that they will pray for her too. This Thanksgiving, we will be giving thanks for all of you. We are so grateful.
Shawn, Maureen, Arik and Nora Getchell
“Whatever you ask for in prayer with faith, you will receive.” Matthew 21:22